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Background: Lack of diversity in participants throughout the research process limits the generalizability of findings and may contribute to health disparities. There are unique challenges to recruitment of families to pediatric cancer research studies, especially for those from disadvantaged backgrounds. Thus, there is a need to evaluate the most effective recruitment and retention strategies to optimize equitable recruitment of diverse participants. Methods: The present study adapted and implemented methods outlined previously in the literature. These previous efforts were developed to address barriers to pediatric research, behavioral health intervention research and research with Black adolescents. Recruitment and retention strategies are described across four different time points: pre-approach, initial connection, building connection and follow-up. Eligible families of children with a pediatric cancer diagnosis were approached during a routine oncology visit. Once consented, enrollment and retention rates over three timepoints of data collection were recorded and evaluated. Results: Results indicated high rates of enrollment (86%) and retention (95%) for eligible participants. There were no trends in heightened attrition for any specific subgroup. Conclusions: The findings of this study are promising and suggest these recruitment and retention strategies may be useful in recruiting individuals from disadvantaged backgrounds. [ABSTRACT FROM AUTHOR]

The WHO Eastern Mediterranean region (EMR) is characterised by highly economically diverse countries, with healthcare systems in various phases of development. Childhood cancer care provision also ranges from that provided in centres able to deliver sophisticated therapy resulting in outcomes comparable to those seen in highly developed nations, to countries with no provision for care of children with cancer. At 10·1 per 100,000 children at risk, the age standardised incidence-rate for cancer in children below 14 years of age is relatively low but may be consequent to poor registration. Shortages in trained care providers were identified in many regional countries, particularly in low and lower-middle income countries, however, implementation of training programs are beginning to counter this deficit. Significant diversity in patient care capacity exists in the region, leading to inequitable access to quality paediatric oncology care. There is strong potential for regional collaboration towards infrastructure and capacity improvement, with facilities available within the EMR for twinning and educational support to those centres and countries that need them. While cancer care coverage is available to citizens of high-income countries, in the lower-income countries out-of-pocket health expenditure can reach 75%. Some relief is achieved through the contribution of multiple charitable foundations working to support childhood cancer care in the region, as well as the provision of care in, often overburdened, public sector hospitals. War and other geo-political turmoil, as well as natural disasters, have negatively impacted healthcare capacity, including childhood cancer care, in several regional countries. Despite all this, the trajectory for change is upward and initiatives such as the WHO Global Initiative for Childhood Cancer are igniting positive change. [ABSTRACT FROM AUTHOR]

Parents of children with cancer provide paediatric palliative care (PPC). However, the activities they perform remain underexplored, especially in low- and middle-income countries (LMICs) where the care heavily relies on family involvement. The aim of this study is to identify parental PPC tasks and intentions to perform PPC tasks and to determine their associated factors. A quantitative cross-sectional descriptive design was used to recruit parents of children with cancer from three major paediatric oncology centres in Lebanon. Data were collected through structured interviews using an adapted questionnaire. The statistical analyses included descriptive, bivariate and regression analyses of PPC tasks and intentions. One hundred and five participants completed the study. On average, parents performed 22 PPC activities. The findings suggested statistically significant associations of the number of PPC tasks with the participants' marital status, number of people living with the child, the intentions to perform the tasks and the number of the child's symptoms in the previous week. Examining parents' tasks in PPC in LMICs, such as Lebanon, enhances knowledge of PPC practice in these regions and informs improvement strategies. These results promote PPC understanding, highlight factors influencing PPC delivery and provide a useful measure of PPC tasks performed by parents of children with cancer. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcomes measures (PROMs) are increasingly being collected within cancer clinical trials, yet limited literature on the feasibility and acceptability of doing so. Methods: We collected parent‐proxy and adolescent (≥12 years old) PROMs through a longitudinal, psychosocial sub‐study ('PRISM‐Impact') embedded in a precision medicine trial for children with poor prognosis cancer ('PRISM'). We report on feasibility (response, participation, and attrition rates; follow‐up and responding to elevated distress) and acceptability (parents' perceived benefit/burden of participation; and impact on decision to participate in PRISM) of PRISM‐Impact. Results: Over the reporting period, 462 families were eligible for PRISM‐Impact. Family and adolescent response rates were 53% and 45%, respectively. Parents whose child had relapsed were more likely to participate in PRISM‐Impact than parents whose child had not (p < 0.001). Parent and adolescent attrition rates were 30% and 56% respectively. We conducted 478 calls for intake and to follow‐up on missing questionnaires, and 122 calls to respond to elevated distress. Parents reported wanting to participate in PRISM‐Impact for altruistic reasons and because they valued psychosocial research. Parents reported little‐to‐no burden and some benefit from participating in PRISM‐Impact, with little change in ratings overtime. Most parents felt that participating in PRISM‐Impact did not impact their desire to participate in PRISM (72%), with some feeling more eager to participate (19%). Conclusions: PRISM‐Impact response rates were comparable to other psycho‐oncology studies, despite the poor prognosis population. Integration of PROMs within a paediatric oncology trial is acceptable to parents, and may provide a more comprehensive assessment of the impact of trial participation. [ABSTRACT FROM AUTHOR]

Objective Emerging research suggests that completion of pediatric cancer treatment can be challenging for caregivers given shifting roles and responsibilities. Lower caregiver quality of life (QOL) has been associated with cancer-related variables, higher cancer caregiving strain, and more household material hardship during pediatric cancer treatment. Caregiver QOL at the end of treatment has not been fully investigated but has implications for child and family well-being. Using a psycho-oncology framework, this study aimed to understand the cumulative burden of household material hardship and cancer-related factors on caregiver QOL at the end of treatment. Methods Caregivers (N  =   143) of children (M age=10.51 years) within 1 year of ending active cancer treatment completed self-report questionnaires assessing their QOL, cancer-specific worry, and material hardship (e.g. housing, insurance). Total months of active cancer treatment were extracted from the medical record. Hierarchical linear regression was used to test the relative effects of length of treatment, material hardship, and cancer-specific worry on caregiver QOL. Results Cancer-specific worry was significantly associated with and accounted for significant variance in caregiver QOL, above and beyond the length of treatment and material hardship. Caregivers who endorsed more cancer-specific worry had poorer QOL. Material hardship was also significantly associated with caregivers' QOL, but length of treatment was not. Conclusions Caregivers with sufficient resources and less worry about cancer have higher QOL. Findings highlight the importance of end-of-treatment screening of caregivers' subjective cancer-specific worry in addition to material hardship, irrespective of their cancer-related stressors, for ongoing psychosocial support. [ABSTRACT FROM AUTHOR]

Background: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal‐setting. Methods: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points. Results: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p =.010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p =.008). Conclusions: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment‐related suffering. Prognostic communication, however, does influence palliative goal‐setting. Evidence‐based interventions are needed to encourage timely, person‐centered prognostic disclosure in the setting of advanced pediatric cancer. Plain Language Summary: Many parents of children with poor‐prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering.Little is known about which factors influence parents to choose palliative care as their child's main treatment goal.To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time.We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals.However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care. The authors collected prospective, longitudinal surveys from parents of children with relapsed and/or refractory neuroblastoma at nine pediatric cancer centers across the United States to identify variables associated with parents' report of palliative goals across advancing illness. They found that parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment‐related suffering, but prognostic communication does influence palliative goal‐setting. [ABSTRACT FROM AUTHOR]

Aim: As the results of pharmacogenetic studies are increasingly translated into clinical practice, the ultimate goal of personalising treatment for children with cancer seems achievable in the future. Our survey aimed to establish to what extent pharmacogenetics has already been utilised in everyday work. Methods: A retrospective survey on pharmacogenetic testing in children treated for malignancies at the Department of Oncology and Haematology, Children's Hospital Zagreb, from 2021 to 2023 was carried out. Results: Pharmacogenetic testing was performed in 17.2% of the 180 children (53.3% female, median age 7.0 years), the greatest number of tests obtained in 2023. Preemptive testing included thiopurine S-methyltransferase polymorphisms (in 94.4% of children with acute lymphoblastic leukaemia and 33.3% with eosinophilic granuloma) and methylenetetrahydrofolate reductase gene polymorphisms assaying (in 55.6% of acute lymphoblastic leukaemia and 23.1% of osteosarcoma patients). In 8 children, pharmacogenetic testing was made due to adverse events (25% lung and 75% liver injury, all grade 4), in the majority of cases presumably related to vincristine. Pharmacogenetic testing results were pathological in all reactively tested patients, requiring dose modification/chemotherapeutics omission in 87.5% of cases. Conclusion: The number of pharmacogenetic assays performed due to high-grade adverse events in children with cancer has been continuously rising, steering otherwise standardised treatment towards a more individualised approach. Preemptive thiopurine Methyltransferase Polymorphism testing has been routinely done in almost all patients planned to receive thiopurines. However, more research is needed on drug-gene pairs in the field of paediatric oncology to minimise treatment-related toxicity and optimise treatment outcomes. [ABSTRACT FROM AUTHOR]

IntroductionCancers are a major cause of childhood mortality worldwide especially in LMICs where underdiagnoses and lack of quality cancer data hampers effective cancer control efforts. This study aimed to document and describe the patterns and characteristics of childhood cancers in the North East geopolitical zone of Nigeria.MethodsThis was a retrospective cross-sectional study that collected cancer data from 4 out of the 6 states in the North East of Nigeria. The data included all malignancies diagnosed in children aged 0-19 years between 2019 and 2022. The age-specific incidence rates were also calculated for the individual 5-year age groups (0–4 years, 5–9 years, 10–14 years, and 15–19 years). The crude incidence rates (CIR) were calculated as the weighted averages of the respective ASRs in each age range within 0-14 years and 0-19 years respectively. The cancers were grouped according to the International Incidence of Childhood Cancers, volume 3 (IICC3).ResultsCancers in people

Objective: In paediatric oncology, little is known about trajectories of illness perceptions and their longitudinal associations with health‐related quality of life (HRQoL). Therefore, the aim of this study was to investigate changes in illness perceptions in children and parents over a one‐year‐period and to investigate predictive value of child's and parent's illness perceptions during acute treatment for child's HRQoL 1 year later. Methods: N = 65 child‐parent‐dyads participated in a longitudinal study (retention rate: 80.2%). Children were 4–18 years of age and underwent acute cancer treatment at baseline. Children and parents reported on their own illness perceptions (Illness‐Perception‐Questionnaire‐Revised), as well as on the child's HRQoL (KINDL‐R) at baseline and one‐year‐follow‐up. Paired‐samples t‐tests were calculated to investigate changes over time. A hierarchical multiple regression analysis was performed to investigate predictive value of child's and parent's illness perceptions for child's HRQoL. Results: Child's HRQoL t(63) = −6.73, p < 0.001, their perceptions of coherence (i.e. understanding; t(54) = −2.36, p = 0.022) and consequences of their illness (t(54) = 2.86, p = 0.006), and parent's perception of cyclical trajectory (t(61) = 2.06, p = 0.044) improved from baseline to 1‐year‐follow‐up. All other illness perceptions remained stable. Exploratory post‐hoc analyses showed differences in the pattern of change in age‐, gender‐, and diagnosis‐specific subgroups. After controlling for baseline levels of HRQoL, child's perceptions of symptoms and consequences were independent predictors of their HRQoL 1 year later (R2 = 0.396, F(2,52) = 10.782, p < 0.001), whereas no parent's illness perceptions added predictive value. Conclusion: In paediatrics, child's and parent's illness perceptions should be assessed. Our findings highlight the importance of illness perceptions as potential modifiable variables in interventions to improve child's HRQoL. [ABSTRACT FROM AUTHOR]

Objective: A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. Methods: We collected data using a semi‐structured interview guide and applied qualitative content analysis. Results: We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0–82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0–18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4–1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. Conclusions: Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system. [ABSTRACT FROM AUTHOR]

Objective: To collate and critically review international evidence on the direct health system costs of children and adolescents and young adults (AYA) with cancer. Methods: We conducted searches in PubMed, MEDLINE, CINAHL, and Scopus. Articles were limited to studies involving people aged 0–39 years at cancer diagnosis and published from 2012 to 2022. Two reviewers screened the articles and evaluated the studies using the Consolidated Health Economic Evaluation Reporting Standards checklist. The reviewers synthesized the findings using a narrative approach and presented the costs in 2022 US dollars for comparability. Results: Overall, the mean healthcare costs for all cancers in the 5 years post diagnosis ranged from US$36,670 among children in Korea to US$127,946 among AYA in the USA. During the first year, the mean costs among children 0–14 years ranged from US$34,953 in Chile to over US$130,000 in Canada. These were higher than the costs for AYA, estimated at US$61,855 in Canada. At the end of life, the mean costs were estimated at over US$300,000 among children and US$235,265 among adolescents in Canada. Leukemia was the most expensive cancer type, estimated at US$50,133 in Chile, to US$152,533 among children in Canada. Overall, more than a third of the total cost is related to hospitalizations. All the included studies were of good quality. Conclusions: Healthcare costs associated with cancer are substantial among children, and AYA. More research is needed on the cost of cancer in low‐ and middle‐income countries and harmonization of costs across countries. [ABSTRACT FROM AUTHOR]

Introduction: Estimated 50,000 minor children in Germany experience a newly diagnosed cancer in one of their parents every year. Family resilience has proven to be an important concept against life crises. However, little research exists regarding family resilience in the context of parental cancer with minor children. Based on the "Family Resilience Framework," the aim of the study is to investigate the processes of family resilience of affected families. In addition, we explore which combinations of promoting family resilience processes can be characterized. Methods: As part of the mixed-method quasi-experimental interventional study "F-SCOUT," a qualitative content analysis was used to analyze the documentation of the "Family-Scouts" (a fixed contact person who advises, accompanies, and supports the families). Documentation was performed by families' study inclusion (T0), after 3 months (T1) and 9 months (T2) concerning current family situation, organization of everyday life, emotional coping, open communication within the family, and planned tasks. Results: The N = 73 families had between one and six children. In 58 (79%) families, the mother had cancer. In the course of the analysis, a category system with 10 main categories and 36 subcategories emerged. Family resilience processes were described to different extents. Combinations of categories promoting family resilience were characterized by the use of social resources, flexibility, economic resources, and open communication. Discussion: The findings are consistent with existing assumptions about family resilience in terms of the importance of social resources, family cohesion, mutual support, flexibility, open communication, and psychological well-being. In contrast to the findings of previous research, spirituality, and collaborative problem-solving indicate less centrality here. In turn, the findings on economic resources and information-seeking provide a valuable addition to the family resilience literature in the context of parental cancer with minor children. [ABSTRACT FROM AUTHOR]

Objective: Parents of children with cancer are at risk for developing psychosocial problems. The present study aims to evaluate the effect of an online group intervention (Op Koers Online, in English: On Track Online) on psychosocial wellbeing and coping skills. Methods: Parents of a child with cancer (diagnosis <5 years ago) participated in a randomized controlled trial. In six consecutive (and one booster‐) protocolled sessions in an online chatroom, trained psychologists and social workers taught coping skills using cognitive behavioral and acceptance and commitment techniques. Questionnaires assessed anxiety, depression, distress, situation‐specific emotional reactions and coping skills (Op Koers Questionnaire/Cognitive Coping Strategies Scale Parent Form) and evaluated the intervention. Linear mixed‐model analyses were performed to detect differences between the conditions in changes over time; T0–T1 and T0–T2 (6‐week and 6‐month follow‐up), and to detect changes in scores T2–T3 (12‐month follow‐up) for the intervention group only. Results: 89 parents were included in analyses (mean age 41.9 years, 86% female, 62%/38% post/during treatment of their child). Beneficial intervention effects (p < 0.05) were found at T1 for anxiety, depression, distress, loneliness and relaxation, and at T2 for anxiety, uncertainty and relaxation. In the intervention condition, scores did not change from T2 to T3, except loneliness that decreased and relaxation that improved. All effect sizes were small to medium (β = −0.21 to 0.46). Parents were generally positive about the intervention. Conclusions: Op Koers Online for parents of children with cancer has a positive effect on psychosocial wellbeing and the coping skill relaxation. Implementation is recommended to prevent psychosocial problems. Clinical Trial Registration: Dutch Trial Register https://onderzoekmetmensen.nl/en NL73763.041.20. [ABSTRACT FROM AUTHOR]

Objective: Cancer predisposition syndromes are being more frequently recognized in the etiology of pediatric oncology and genetic‐related technologies are evolving rapidly, leading to an increasing availability of genetic testing for families. This systematic review assessed the psychological impact of genetic testing on children and parents in the context of childhood cancer. Methods: Searches were performed using three databases (Web of Science, Pubmed and Embase) to identify relevant empirical studies. Following Cochrane guidelines, we screened 3838 articles and identified 18 eligible studies, representing the perspectives of children and/or parents. Results: The included studies described the impact of genetic testing in different contexts (e.g. predictive testing and diagnostic testing) and in different subgroups, (e.g. carriers and non‐carriers). Overall, the studies did not identify clinically‐relevant long‐term increases in negative emotions (depression, anxiety, distress, uncertainty, guilt) as a result of genetic testing. Negative emotions were typically time‐limited and generally occurred in families with particular characteristics (e.g. those with a history of multiple cancer diagnoses, families receiving an unfavorable result for one child and a favorable result in siblings, and those with pre‐existing mental health difficulties). Positive emotions (hopefulness, relief and peace of mind) were also reported. Knowing their genetic risk status appeared to help to foster empowerment among families, regardless of the result and any associated emotions. Conclusions: Genetic testing in pediatric oncology does not appear to cause significant additional harm and can lead to positive outcomes. Clinicians need to be especially attentive when counseling families at increased risk of distress. [ABSTRACT FROM AUTHOR]

Objective: Limited research has characterized cancer‐related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e., prognosis, risk for diminished quality of life) and views of survivor quality of life (QoL). Methods: At five years post‐diagnosis or relapse, survivors (n = 100; Mage = 15.84 years; 89% White), mothers (n = 127), and fathers (n = 59) reported their CRS. Perceived prognosis and risk for diminished QoL were rated on a 0%–100% visual analogue scale, while the PedsQL assessed QoL. Results: CRS was low (M = 1.6–1.8, scale: 1–4); mothers reported greater stress than survivors, p = 0.038, d = 0.25. There was an indirect effect of survivors' perceived prognosis on their QoL through CRS, CI = 0.04 to 0.25, R2 = 0.32. Among mothers, there was an indirect effect of perceived prognosis/risk for diminished QoL on their reports of survivor QoL through CRS, CI = 0.03 to 0.23 and −0.15 to −0.03, R2 = 0.28 and 0.32, respectively. There were no indirect effects among fathers. Conclusions: CRS may be an important, modifiable factor that could improve survivors' QoL. Research is needed to examine how CRS changes over time to assess the utility of interventions among female survivors, mothers, and those with lower prognosis estimates. [ABSTRACT FROM AUTHOR]

Objective: Post‐traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long‐term childhood cancer survivors (CCS‐parents) compared to parents of similar‐aged children of the general population (comparison‐parents), (ii) normative data for the Swiss population, and (iii) psychological, socio‐economic, and event‐related characteristics associated with PTG. Methods: CCS‐parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper‐based survey, including the PTG‐Inventory (total score 0–105). We carried out (i) t‐tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. Results: In total, 746 CCS‐parents (41.7% fathers, response‐rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7–40) years), 411 comparison‐parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response‐rate = 20.1%) participated. Mean [M] total PTG was in CCS‐parents M = 52.3 versus comparison‐parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS‐parents showed higher 'relating‐to‐others' (18.4 vs. 17.3, p = 0.010), 'spiritual‐change' (3.3 vs. 3.0, p = 0.038) and 'appreciation‐of‐life' (9.3 vs. 8.4, p = 0.027) than comparison‐parents, but not in 'new‐possibilities' and 'personal‐strength'. Female gender, older age, higher post‐traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. Conclusions: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new‐possibilities and personal development may help support parents in developing a sense of hope. [ABSTRACT FROM AUTHOR]

Objective Consistent family rules and routines promote positive adaptation to stress and may be protective to child emotional and behavioral functioning. Few studies have quantified family engagement in these behaviors during pediatric cancer treatment or examined associations with child emotional and behavioral health. Methods In this cross-sectional observational study, 86 primary caregivers of youth ages 2–14 years (M  =   7.9) with an initial diagnosis of cancer within 16 weeks reported on their frequency of engagement in family rules and routines (e.g. sleep, schoolwork, and meal routines) before their child's cancer diagnosis and their current frequency of engagement in the same routines. Caregivers also reported demographics, psychosocial distress, and child emotional and behavioral health outcomes. Analyses examined demographic and psychosocial factors associated with engagement in rules and routines during cancer treatment, and associations with child emotional and behavioral health. Results Families reported a lower frequency of engagement in rules and routines during cancer treatment, compared to before treatment (mean difference 0.8 SDs [95% confidence interval 0.7–1.1 SDs]). Caregiver factors associated with lower engagement in rules and routines during treatment included being married, having lower educational attainment, and higher levels of psychosocial distress. Families who engaged in higher levels of rules and routines during treatment reported fewer child externalizing and behavioral challenges. There was limited evidence of association between family rules and routines and child internalizing outcomes. Conclusions Results found that engaging in family rules and routines during cancer treatment was associated with fewer child behavioral challenges during treatment. Future directions include longitudinal examinations of family rules, routines, and child emotional/behavioral outcomes to examine directional impact over time. [ABSTRACT FROM AUTHOR]

Immune checkpoint inhibitors (ICIs) are a relatively new class of immunotherapy which bolsters the host immune system by "turning off the brakes" of effector cells (e.g., CTLA-4, PD-1, PD-L1). Although their success in treating adult malignancy is well documented, their utility in pediatric cancer has not yet been shown to be as fruitful. We review ICIs, their use in pediatric malignancies, and active pediatric clinical trials, exemplifying some of adult efforts that could be related to pediatric future trials and complications of ICI therapy. Through our review, we propose the consideration of ICI as standard therapy in lymphoma and various solid tumor types, especially in relapsed or refractory (R/R) disease. However, further studies are needed to demonstrate ICI effectiveness in pediatric leukemia. [ABSTRACT FROM AUTHOR]

Objective The role of respiratory viral pathogens (RVPs) in children with cancer having febrile neutropenic (FEN) episodes has not been well studied. The objectives of this study were to investigate the prevalence and clinical outcomes of RVP in this group. Methods Pediatric patients with cancer and an episode of FEN, presenting between March 2021 and March 2022 were included. All data were retrospectively retrieved from patient files. A throat swab sample was obtained for the detection of 17 RVPs and evaluated by a polymerase chain reaction (PCR) method. Results A total of 110 (male n = 76; 69.1%) patients with a mean ± standard deviation age of 6.68 ± 4.92 years were included. Reproduction in PCR was seen in 76 (69.1%) children. Rhinovirus (31.6%) and respiratory syncytial virus (15.8%) were the most frequently detected viruses. Mixed respiratory viruses (coinfections of ≥2 viruses) were only seen in 13%. The median (range) duration of hospitalization was 11 (2–143) days, and 8.2% of the children were admitted to the pediatric intensive care unit (PICU). The median (range) length of stay (LOS) in the PICU was 8 (1–100) days. Overall mortality rate was 3.6%. There was no significant difference in LOS in the hospital, rate of admission to PICU, LOS in the PICU, and the mortality rate between children with and without growth in PCR (p > 0.05). Conclusion There was high prevalence of RVP in children with cancer and FEN. However, given that having a positive RVP does not affect LOS in the hospital/PICU or disease severity, in this population, there was no association between positive PCR findings and clinical features investigated or outcome. [ABSTRACT FROM AUTHOR]

Objective: Young adult survivors of childhood cancers are less likely to be physically active compared to non‐cancer affected controls, putting them at an increased risk for morbidity and mortality. Preliminary research has examined how mental health may contribute to physical activity (PA) in this population; however, those more recently diagnosed and Hispanic survivors have been understudied. The objectives were to examine associations of dimensions of depressive symptoms, demographic characteristics, and cancer‐related predictors with PA among a diverse sample of young adult childhood cancer survivors. Methods: Participants (N = 895) diagnosed with childhood cancer between 1996 and 2010 (53% Hispanic; Mage = 26.2 ± 4.9 years; Mage = 14.8 ± 4.4 years at diagnosis) were recruited from the Los Angeles County cancer registry. Self‐report surveys assessed current PA, depressive symptoms (i.e., positive affect, negative affect, somatic symptoms, interpersonal problems), late effects of cancer treatment, and demographic factors. Multivariable ordinal regressions examined the study objectives. Results: About 70% of participants engaged in low or moderate frequency PA (fewer than 3 days a week). Participants who were older, female, Asian, or reported more late effects of cancer treatment were less likely to engage in PA. Greater positive affect was significantly associated with higher frequency PA, whereas negative affect, somatic symptoms, and interpersonal problems were not associated with PA. Conclusions: The findings suggests that positive—but not negative—mental health characteristics are more likely to facilitate or result from PA among young adult survivors of childhood cancers. Interventions seeking to increase PA may benefit from considering positive aspects of mental health/well‐being. [ABSTRACT FROM AUTHOR]

Background: Despite a plethora of literature on barriers to addressing future fertility in childhood cancer survivors, the data are not representative of limited middle-income settings. Unique and context-specific factors may influence addressing future fertility care among childhood cancer survivors in Uganda. This study aimed to explore the experiences, attitudes, and perceptions of parents on their interactions with health providers about future fertility, as part of their child's cancer survivorship. Methods: Using grounded theory, semistructured interviews were conducted with parents of children diagnosed with cancer, <18 years of age, and not in the induction or consolidation phases of treatment. Transcripts were thematically analyzed. Results: A total of 20 participants were interviewed, with the majority identifying as female (n = 18). The global theme that arose was the importance of shared decision-making, and the key themes encompassing this were as follows: (1) importance of accurate information, (2) respect of autonomy, and (3) engagement and psychosocial support. Conclusion: In Uganda, parents of children with cancer value a multifaceted approach to satisfactory decision-making within the context of oncofertility. [ABSTRACT FROM AUTHOR]

Abstract Background The majority of childhood, Adolescent and Young Adult (AYA) cancer survivors suffers from long-lasting health issues following cancer treatment. It is therefore critical to explore effective health promotion strategies to address their needs. Exposure to nature is a promising approach to support the needs of young cancer survivors. This study investigated whether it is feasible to conduct a randomized controlled trial (RCT) of a wilderness program for childhood and AYA cancer survivors. Methods Eligible participants were aged 16–39 years, had a cancer diagnosis, and met minimal criteria. Seventy-one individuals expressed interest and 59 were randomized to either a wilderness or a holiday program. The wilderness program involved an 8-day expedition including backpacking, sea kayaking, gorge climbing, camping, bush-craft skills, and mindfulness-practices. It was followed by a 4-day basecamp after 3 months. The comparison was an 8-day holiday program at a Spa-hotel followed by a 4-day holiday program at the same hotel after 3 months. Primary outcome was study feasibility and safety. Results Ultimately, 19 AYAs participated in the wilderness and 23 in the holiday program. All completed the study at one-year follow-up. Participants were mostly female (70%) and represented diverse cancers. Clinical characteristics were similar between study arms excepting greater age at cancer diagnosis in the wilderness program (age 19.1 vs. 12.5; p = 0.024). Program adherence and data completeness was high (> 90%) in both arms. Adverse Effects (AEs) in the wilderness vs. the holiday program were similar (Relative Risk: 1.0, 95% Confidence Interval 0.8–1.3). The most frequent AE was tiredness, all were mild to moderate in severity, and serious AEs were not reported. Nature connectedness significantly increased over time in the wilderness program participants, but not in the holiday program (p

Objective: The feasibility and acceptability of a tiered intervention model of school intervention services was investigated in response to the publication of evidence‐based Psychosocial Standards of Care for Children with Cancer and their Families. Method: Children with newly diagnosed malignancy or transitioning to long‐term survivorship care were eligible. Families received universal school needs assessment and intervention targeted at the level of risk identified. Academic risk and resource utilization data collected over 1 year were used to evaluate model feasibility and surveys evaluated family and medical provider satisfaction with the model. Results: One hundred and eight children were enrolled and had academic risk assessed at enrollment as high (25%), moderate (44.4%) or low (30.6%) risk. School liaison staff time spent providing intervention was related to the level of risk. 54.6% of patients reported a decrease in risk status at the end of 1 year of intervention. Parents (94%) and medical providers (100%) chose responses of "agree" or "strongly agree" when asked if they were satisfied with the intervention received over the year. Conclusions: The tiered model of care identifies the students with the highest need for intervention, allows for more targeted use of resources, and successfully meets the Psychosocial Standard of Care for academic needs. [ABSTRACT FROM AUTHOR]

Introduction: Classical Hodgkin lymphoma (cHL) is the most common pediatric lymphoma. Approximately 10% of patients develop refractory or recurrent disease. These patients are treated with intensive chemotherapy followed by consolidation with radiotherapy or high-dose chemotherapy and autologous stem cell reinfusion. Although this treatment is effective, it comes at the cost of severe long-term adverse events, such as reduced fertility and an increased risk of secondary cancers. Recently, promising results of inducing remission with the immune checkpoint inhibitor nivolumab (targeting PD-1) and the anti-CD30 antibody-drug conjugate Brentuximab vedotin (BV) +/- bendamustine were published. Methods: Here we describe a cohort of 10 relapsed and refractory pediatric cHL patients treated with nivolumab + BV +/- bendamustine to induce remission prior to consolidation with standard treatment. Results and discussion: All patients achieved complete remission prior to consolidation treatment and are in ongoing complete remission with a median follow-up of 25 months (range: 12 to 42 months) after end-of-treatment. Only one adverse event of CTCAE grade 3 or higher due to nivolumab + BV was identified. Based on these results we conclude that immunotherapy with nivolumab + BV +/- bendamustine is an effective and safe treatment to induce remission in pediatric R/R cHL patients prior to standard consolidation treatment. We propose to evaluate this treatment further to study putative long-term toxicity and the possibility to reduce the intensity of consolidation treatment. [ABSTRACT FROM AUTHOR]

Background: The majority of childhood, Adolescent and Young Adult (AYA) cancer survivors suffers from long-lasting health issues following cancer treatment. It is therefore critical to explore effective health promotion strategies to address their needs. Exposure to nature is a promising approach to support the needs of young cancer survivors. This study investigated whether it is feasible to conduct a randomized controlled trial (RCT) of a wilderness program for childhood and AYA cancer survivors. Methods: Eligible participants were aged 16–39 years, had a cancer diagnosis, and met minimal criteria. Seventy-one individuals expressed interest and 59 were randomized to either a wilderness or a holiday program. The wilderness program involved an 8-day expedition including backpacking, sea kayaking, gorge climbing, camping, bush-craft skills, and mindfulness-practices. It was followed by a 4-day basecamp after 3 months. The comparison was an 8-day holiday program at a Spa-hotel followed by a 4-day holiday program at the same hotel after 3 months. Primary outcome was study feasibility and safety. Results: Ultimately, 19 AYAs participated in the wilderness and 23 in the holiday program. All completed the study at one-year follow-up. Participants were mostly female (70%) and represented diverse cancers. Clinical characteristics were similar between study arms excepting greater age at cancer diagnosis in the wilderness program (age 19.1 vs. 12.5; p = 0.024). Program adherence and data completeness was high (> 90%) in both arms. Adverse Effects (AEs) in the wilderness vs. the holiday program were similar (Relative Risk: 1.0, 95% Confidence Interval 0.8–1.3). The most frequent AE was tiredness, all were mild to moderate in severity, and serious AEs were not reported. Nature connectedness significantly increased over time in the wilderness program participants, but not in the holiday program (p < 0.001). No differences were found between the two study arms regarding quality of life, self-esteem, or self-efficacy. Conclusion: It is feasible to conduct a RCT and a supervised wilderness adventure is equally safe for childhood and AYA cancer survivors as a holiday program. This pilot study lays the foundation for a larger RCT to investigate the effectiveness of wilderness programs on the health of young cancer survivors. Trial registration date and number: 18/02/2021, NCT04761042 (clinicaltrials.gov). [ABSTRACT FROM AUTHOR]

Introduction Children with cancer are immunocompromised due to the disease per se or anticancer therapy. Children are believed to be at a lower risk of severe coronavirus disease 2019 (COVID-19) disease. Objective This study analyzed the outcome of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children with cancer. Materials and Methods A retrospective analysis was performed on patients (≤ 14 years) with cancer attending the pediatric oncology services of our institute who tested positive for the SARS-CoV-2 infection and those who had COVID-19 disease between August 2020 and May 2021. Real-time reverse transcriptase-polymerase chain reaction performed on the nasopharyngeal swab identified the SARS-CoV-2 infection. The primary endpoints were clinical recovery, interruption of cancer treatment, and associated morbidity and mortality. Results Sixty-six (5.7%) of 1,146 tests were positive for the SARS-CoV-2 infection. Fifty-two (79%) and 14 (21%) patients had hematolymphoid and solid malignancies. Thirty-two (48.5%) patients were asymptomatic. A mild-moderate, severe, or critical disease was observed in 75% (18/24), 12.5% (3/24), and 12.5% (3/24) of the symptomatic patients. The "all-cause" mortality was 7.6% (5/66), with only one (1.5%) death attributable to COVID-19. Two (3%) patients required ventilation. Two (3%) patients had a delay in cancer diagnosis secondary to COVID-19 infection. Thirty-eight (57.6%) had a disruption in anticancer treatment. Conclusion Children with cancer do not appear to be at an increased risk of severe illness due to SARS-CoV-2 infection. Our findings substantiate continuing the delivery of nonintensive anticancer treatment unless sick. However, SARS-CoV-2 infection interrupted anticancer therapy in a considerable proportion of children. [ABSTRACT FROM AUTHOR]

Objective: Childhood cancer confronts families with major challenges. The study aimed at developing an empirical and multi‐perspective understanding of emotional and behavioral problems of cancer survivors diagnosed with leukemia and brain tumors and their siblings. Further, the concordance between child self‐report and parent proxy‐report was examined. Methods: 140 children (72 survivors, 68 siblings) and 309 parents were included in the analysis (respond rate: 34%). Patients, diagnosed with leukemia or brain tumors, and their families were surveyed on average 7.2 months after the end of intensive therapy. Outcomes were assessed using the German SDQ. Results were compared with normative samples. Data were analyzed descriptively, and group differences between survivors, siblings, and a norm sample were determined using one‐factor ANOVA followed by pairwise comparisons. The concordance between the parents and children was determined by calculating Cohen's kappa coefficient. Results: No differences in the self‐report of survivors and their siblings were identified. Both groups reported significantly more emotional problems and more prosocial behavior than the normative sample. Although the interrater reliability between parents and children was mostly significant, low concordances were found for emotional problems, prosocial behavior (survivor/parents), and peer relationship problems (siblings/parents). Conclusion: The findings point out the importance of psychosocial services in regular aftercare. These should not only focus on survivors, but additionally address the siblings' needs. The low concordance between the parents' and the children's perspectives on emotional problems, prosocial behavior, and peer relationship problems suggests the inclusion of both perspectives to allow needs‐based support. Key points: Childhood cancer survivor and siblings reported higher levels of emotional problems and prosocial behavior compared to normative values.Parent proxy‐report is an important and meaningful tool to evaluate children's distress and needs.Due to the nonconformity found between parents and children, especially regarding non‐observable issues, the parent proxy‐report should not be solely relied upon. [ABSTRACT FROM AUTHOR]

Therapy results in pediatric Hodgkin lymphoma reflect remarkable progress in pediatric oncology. In the last decade, relevant development of new therapeutic options for children with refractory or relapsed disease has been made. In this study, we retrospectively analyzed therapy results and risk factors in children treated in a single oncology center according to five therapeutic protocols. Data from 114 children treated by a single institution between 1997 and 2022 were analyzed. Classic Hodgkin lymphoma therapy results were divided into four therapeutic periods: 1997–2009, 2009–2014, 2014–2019, and 2019–2022. For nodular lymphocyte-predominant Hodgkin lymphoma, data from one therapeutic protocol was analyzed. For the entire group, the 5-year probability of overall survival was 93.5%. There were no statistically significant differences between therapeutic periods. The occurrence of B symptoms at diagnosis and incidence of relapse were risk factors for death (p = 0.018 and p < 0.001). Relapse occurred in 5 cases. The 5-year probability of relapse-free survival for the entire group was 95.2%, without significant differences between groups. Patients treated between 1997 and 2009 had over a sixfold higher risk for events, defined as primary progression, relapse, death, or incidence of secondary malignancies (OR = 6.25, p = 0.086). The 5-year probability of event-free survival for all patients was 91.3%. Five patients died, and the most common cause of death was relapse. Modern therapeutic protocols in pediatric Hodgkin lymphoma are marked by excellent outcomes. Patients with disease relapses have a notably high risk of death, and the development of new therapeutic options for this group remains one of the main goals of current trials. [ABSTRACT FROM AUTHOR]

Radiomics is widely used in adult tumors but has been rarely applied to the field of pediatrics. Promoting the application of radiomics in pediatric diseases, especially in the early diagnosis and stratified treatment of tumors, is of great value to the realization of the WHO 2030 "Global Initiative for Childhood Cancer." This paper discusses the general characteristics of radiomics, the particularity of its application to pediatric diseases, and the current status and prospects of pediatric radiomics. Radiomics is a data-driven science, and the combination of medicine and engineering plays a decisive role in improving data quality, data diversity, and sample size. Compared with adult radiomics, pediatric radiomics is significantly different in data type, disease spectrum, disease staging, and progression. Some progress has been made in the identification, classification, stratification, survival prediction, and prognosis of tumor diseases. In the future, big data applications from multiple centers and cross-talent training should be strengthened to improve the benefits for clinical workers and children. [ABSTRACT FROM AUTHOR]

Background: Gene fusions are important cancer drivers in pediatric cancer and their accurate detection is essential for diagnosis and treatment. Clinical decision-making requires high confidence and precision of detection. Recent developments show RNA sequencing (RNA-seq) is promising for genome-wide detection of fusion products but hindered by many false positives that require extensive manual curation and impede discovery of pathogenic fusions. Methods: We developed Fusion-sq to overcome existing disadvantages of detecting gene fusions. Fusion-sq integrates and "fuses" evidence from RNA-seq and whole genome sequencing (WGS) using intron–exon gene structure to identify tumor-specific protein coding gene fusions. Fusion-sq was then applied to the data generated from a pediatric pan-cancer cohort of 128 patients by WGS and RNA sequencing. Results: In a pediatric pan-cancer cohort of 128 patients, we identified 155 high confidence tumor-specific gene fusions and their underlying structural variants (SVs). This includes all clinically relevant fusions known to be present in this cohort (30 patients). Fusion-sq distinguishes healthy-occurring from tumor-specific fusions and resolves fusions in amplified regions and copy number unstable genomes. A high gene fusion burden is associated with copy number instability. We identified 27 potentially pathogenic fusions involving oncogenes or tumor-suppressor genes characterized by underlying SVs, in some cases leading to expression changes indicative of activating or disruptive effects. Conclusions: Our results indicate how clinically relevant and potentially pathogenic gene fusions can be identified and their functional effects investigated by combining WGS and RNA-seq. Integrating RNA fusion predictions with underlying SVs advances fusion detection beyond extensive manual filtering. Taken together, we developed a method for identifying candidate gene fusions that is suitable for precision oncology applications. Our method provides multi-omics evidence for assessing the pathogenicity of tumor-specific gene fusions for future clinical decision making. [ABSTRACT FROM AUTHOR]

Precision medicine programs aim to utilize novel technologies to identify personalized treatments for children with cancer. Delivering these programs requires interdisciplinary efforts, yet the many groups involved are understudied. This study explored the experiences of a broad range of professionals delivering Australia's first precision medicine trial for children with poor-prognosis cancer: the PRecISion Medicine for Children with Cancer (PRISM) national clinical trial of the Zero Childhood Cancer Program. We conducted semi-structured interviews with 85 PRISM professionals from eight professional groups, including oncologists, surgeons, clinical research associates, scientists, genetic professionals, pathologists, animal care technicians, and nurses. We analyzed interviews thematically. Professionals shared that precision medicine can add complexity to their role and result in less certain outcomes for families. Although many participants described experiencing a greater emotional impact from their work, most expressed very positive views about the impact of precision medicine on their profession and its future potential. Most reported navigating precision medicine without formal training. Each group described unique challenges involved in adapting to precision medicine in their profession. Addressing training gaps and meeting the specific needs of many professional groups involved in precision medicine will be essential to ensure the successful implementation of standard care. [ABSTRACT FROM AUTHOR]

Introduction: Psychosocial impacts of cancer are well-recognized for pediatric patients but few studies examine challenges specific to schooling after diagnosis and caregiver-related factors that may influence coping. This study describes caregiver experiences of school-related psychosocial functioning and how caregiver preparedness and understanding of these challenges influence coping. Methods: Caregivers of 175 childhood cancer survivors completed a nationally disseminated survey related to caregiver preparedness, clinician-provided education, and school-related experiences. Caregiver-reported preparedness and understanding were evaluated as predictors of psychosocial coping; factor analysis was performed to identify compound scales of preparedness and understanding. Results: Caregivers reported that the cancer treatment experience resulted in their children being more stressed and anxious about returning to school (60.2% and 70.2%, respectively) and more sensitive to peers (73.4%). It also made it harder for them to socialize and fit in with peers (58.2% and 49.7%, respectively). Caregiver preparedness and understanding predicted improved psychosocial coping with regard to child stress regarding socialization, fitting in, and anxiety but not sensitivity to peers. Teacher supportiveness and caregiver perception of clinician understanding also correlated with function. Discussion: Findings highlight the importance of caregiver education and preparedness as these reliably predict child psychosocial function and coping as they return to school after a cancer diagnosis and that all children are at risk for psychosocial challenges following a cancer diagnosis. Opportunities exist for clinicians to provide more education and anticipatory guidance to families as a potential means to reduce poor coping when a child returns to school following cancer. [ABSTRACT FROM AUTHOR]

Objective: Research has indicated that social support may play a protective role in the face of stress and help children and adolescents cope with the demands and challenges they face on a daily basis during their cancer journey. However, social support tends to reduce over time as survivors overcome their illness despite its ongoing importance even years after treatment has finished. The current review aimed to systematically examine existing evidence on social support in child and adolescent cancer survivors. Methods: Five databases (PsychINFO, CINAHL, EMBASE, PubMed and Web of Science) were searched systematically to identify quantitative studies which explored social support from the perspective of child and adolescent cancer survivors aged 18 years or younger. Results: A total of 10 studies met the eligibility criteria for inclusion. Findings from the review indicate that family and friends, particularly parents, are important sources of social support for survivors. Social support was positively related to posttraumatic growth, school re‐entry and physical activity, and negatively related to psychological stress, depression, anxiety and stress. Furthermore, findings relating to gender, age and group differences were mixed. A number of methodological concerns were identified in the reviewed studies including small sample sizes, as well as a lack of consistency in the measurement of social support. Conclusions: Future studies of social support for child and adolescent cancer survivors need to address these shortcomings to help inform care and support interventions promoting social support in survivors. [ABSTRACT FROM AUTHOR]

Objective: To describe young adult childhood cancer survivors' disclosure of their cancer history (i.e., disclosure behavior, difficulty, and timing), perceived partner responses, and associations with relationship status satisfaction. Methods: German long‐term survivors of childhood cancer (N = 509; response rate: 31.3%, age 21–26, 59.7% female) completed a registry‐based nationwide survey (embedded mixed methods design, including closed and open‐ended questions) on measures about disclosure history (behavior, difficulty, and timing), partner responses, and relationship status satisfaction. Statistical (χ2‐, t‐, or F‐tests) and qualitative analyses were conducted. Results: Half of all survivors always disclosed their cancer history to romantic partners. Thereby, three themes for considering (non‐)disclosure were identified: Survivors' attitudes, having integrated cancer as part of their identity, and anticipated effects on romantic relationships. About 40% indicated having no difficulties with disclosing their cancer history. The timing of disclosure varied, with most survivors disclosing after a few dates. Facilitators of disclosure were the visibility of their former illness (e.g., scars), having trust in a (potential) partner, getting older/mature, and previous positive experiences with disclosure. Few survivors (13.8%) had ever experienced negative responses from dating partners. Yet, those who had negative experiences, found it more difficult to disclose their cancer history. Survivors were overall rather satisfied with their relationship status, with partnered survivors reporting greater satisfaction than singles (Hedge's g = 1.68); and particularly partnered survivors with past positive responses being most satisfied. Conclusions: Young adult childhood cancer survivors appear rather open in disclosing their cancer history to (potential) romantic partners, and few experienced negative responses. Psycho‐educational programs may emphasize such findings in helping to prevent fear of disclosure or avoidance of dating and disclosure among survivors. [ABSTRACT FROM AUTHOR]

Purpose: The present study aimed to determine the prevalence of self-reported oral problems and the oral health–related quality of life (OHRQoL) in childhood cancer survivors (CCS). Methods: Patient and treatment characteristics of CCS have been collected in a cross-sectional study, part of the multidisciplinary DCCSS-LATER 2 Study. To assess self-reported oral health problems and dental problems, CCS filled out the ‘Toegepast-Natuurwetenschappelijk Onderzoek’ (TNO) oral health questionnaire. OHRQoL was assessed by the Dutch version of the Oral Health Impact Profile-14 (OHIP-14). Prevalences were compared with two comparison groups from the literature. Univariable and multivariable analyses were performed. Results: A total of 249 CCS participated in our study. The OHIP-14 total score had a mean value of 1.94 (sd 4.39), with a median score of 0 (range 0–29). The oral problems ‘oral blisters/aphthae’ (25.9%) and ‘bad odor/halitosis’ (23.3%) were significantly more often reported in CCS than in comparison groups (12% and 12%, respectively). The OHIP-14 score was significantly correlated with the number of self-reported oral health problems (r =.333, p<0.0005) and dental problems (r =.392, p <0.0005). In multivariable analysis, CCS with a shorter time since diagnosis (10-19 years vs. ≥30 years) had a 1.47-fold higher risk of ≥1 oral health problem. Conclusion: Though the perceived oral health is relatively good, oral complications following childhood cancer treatment are prevalent in CCS. This underlines that attention to impaired oral health and awareness on this topic is mandatory and regular visits to the dentist should be a part of long-term follow-up care. [ABSTRACT FROM AUTHOR]

Background: There is substantial heterogeneity in symptom management provided to pediatric patients with cancer. The primary objective was to describe the adaptation process and specific adaptation decisions related to symptom management care pathways based on clinical practice guidelines. The secondary objective evaluated if institutional factors were associated with adaptation decisions. Methods: Fourteen previously developed symptom management care pathway templates were reviewed by an institutional adaptation team composed of two clinicians at each of 10 institutions. They worked through each statement for all care pathway templates sequentially. The institutional adaptation team made the decision to adopt, adapt or reject each statement, resulting in institution-specific symptom management care pathway drafts. Institutional adaption teams distributed the 14 care pathway drafts to their respective teams; their feedback led to care pathway modifications. Results: Initial care pathway adaptation decision making was completed over a median of 4.2 (interquartile range 2.0-5.3) weeks per institution. Across all institutions and among 1350 statements, 551 (40.8%) were adopted, 657 (48.7%) were adapted, 86 (6.4%) were rejected and 56 (4.1%) were no longer applicable because of a previous decision. Most commonly, the reason for rejection was not agreeing with the statement (70/86, 81.4%). Institutional-level factors were not significantly associated with statement rejection. Conclusions: Acceptability of the 14 care pathways was evident by most statements being adopted or adapted. The adaptation process was accomplished over a relatively short timeframe. Future work should focus on evaluation of care pathway compliance and determination of the impact of care pathway-consistent care on patient outcomes. Trial registration: clinicaltrials.gov, NCT04614662. Registered 04/11/2020, https://clinicaltrials.gov/ct2/show/NCT04614662?term=NCT04614662&draw=2&rank=1. [ABSTRACT FROM AUTHOR]

This paper focuses on the growth and development of oncology research in India in terms of publication output as reflected in the Web of Science database. A total of 1380 publications were published in the field from 2011 to 2020. The highest number of publications 239 were published in 2020. The highest value of compound annual growth rate i.e. 0.204 was recorded in the year 2012 and the lowest CAGR i.e. -0.068 was recorded in the year 2016. The compound annual growth rate of publications was in fluctuated from 2011 to 2020. The relative growth rates have decreased from 0.90 (2012) to 0.19 (2020). The doubling time has gradually increased from 0.77 (2012) to 3.64 (2020). The study also found that the average Immediacy Index was 35.26, the average RCI value is 0.98 and the average relative citation impact is 0.98 during 2011-2020. Out of 1380 total publications, the highest number of papers are published in the form of journal articles. Indian Journal of Cancer, Pediatric Blood Cancer, and Journal of Cancer Research and Therapeutics are the major most prolific journals in the field of oncology. [ABSTRACT FROM AUTHOR]

Background and Aims: A chronic feeling of fatigue occurs in up to 85% of childhood cancer survivors (CCS). This phenomenon has a detrimental effect on quality of life, reintegration in daily life activities and psychosocial functioning of the patient. Therefore, it is important to elucidate potential individual risk and protective factors. Methods: CCS who were treated in the University Hospital of Leuven, completed two annual questionnaires on cancer‐related distress (fear of cancer recurrence and post‐traumatic stress, resilience and fatigue). Associations between distress and fatigue levels were examined by performing cross‐lagged panel analyses. Resilience was included as a potential moderator. These models included all within‐time associations, stability paths, and cross‐lagged paths. Gender and time since diagnosis were included as covariates. Results: In total, 110 CCS participated in this study, aged 14–25 years (average time since diagnosis 12.2 years; 41.8% boys; diagnosed with leukemia/lymphoma [49%], solid tumor [15%], brain tumor [16%] or other [20%]). Fear of cancer recurrence and post‐traumatic stress at baseline positively predicted fatigue 1 year later. Cross‐lagged panel analyses showed that resilience did not buffer the effect of fear of cancer recurrence on fatigue, in contrary to our expectations. Stability coefficients were high for all study variables. Conclusion: This study indicates associations between cancer‐related distress (fear of cancer recurrence and post‐traumatic stress), resilience and cancer‐related fatigue over time in CCS. Interventions to improve fatigue levels could be focusing on both tackling cancer‐related distress, while improving resilience levels as well. [ABSTRACT FROM AUTHOR]

Objective: This study examines the differential association between sex and depression, and the possible mediating pathways. Methods: We analysed survey data from 296 (age 7–17.1 years) cancer survivors from three centres affiliated with Beijing Children's Hospital. Linear regression analysis was used to assess the association between sex and depression. Quantile regression analysis was used to estimate the regression coefficients (β) and 95% confidence intervals for sex in depression at different quantiles. Mediation analysis with multiple mediators was used to explore the effects of sex on depression. Results: Using linear regression, we found that the age ranged from 8.7 to 10.4 years and the regression coefficient of sex on depression was significant (β = −2.75, p = 0.03). Quantile regression results showed a significant negative association between sex and depression in the 0.30–0.75 quantiles. Mediation analysis revealed that boys were 1.545 times more depressed than girls, with family resilience, self‐perceived burden, and behavioural problems explaining approximately 16.79%, 21.57%, and 43.94% of the sex difference, respectively. The combined effect of family functioning, resilience, social support, self‐perceived burden, and behavioural problems might explain the 89.17% sex difference. Conclusion: Clinicians should consider sex effects when assessing depression in childhood cancer survivors and target sex‐specific interventions for further treatment. [ABSTRACT FROM AUTHOR]

Introduction: Parents of children with cancer face psychological challenges that can result in significant distress. It has been found that problem‐solving (PS) could mitigate emotional distress (ED) in this population, but mechanisms of this relation are poorly understood. This study aimed to assess whether there is a link between PS and ED through perceived control and self‐efficacy. Methods: We included 119 parents (67 mothers, 52 fathers, including 50 couples) whose child was diagnosed with cancer. We evaluated whether PS was associated with ED through perceived control and self‐efficacy in couples of parents. Results: We found no direct association between PS and ED (β = −0.01, p = 0.92). Our results indicated a significant indirect effect between ED and PS with perceived control as the intermediary variable (β = −0.24, p < 0.001, 95% CI [−0.41, −0.11]). However, there was no indirect association between ED and PS with self‐efficacy as the intermediary variable (β = −0.04, p = 0.26, 95% CI [−0.11, 0.09]). The effect size was large in magnitude (R2 = 0.59 for ED). Conclusion: The mitigating role of PS on ED is better explained by an enhanced experience of control than by improved self‐efficacy. Future interventions should directly target the action mechanism behind PS and ED in both mothers and fathers by targeting their perceived control. [ABSTRACT FROM AUTHOR]

PURPOSE: To codesign, develop, and evaluate a smartphone app that includes patient-reported measures of symptoms and real-time advice in children's cancer. METHODS: The Oncology Hub is a comprehensive approach to symptom management that includes a suite of codesigned tools and resources including clinical algorithms to determine the level of concern, symptom management advice, and resources for families of children with cancer. The evaluation involved Think Aloud interviews with parent and adolescent patients to complete tasks in the app as well as a User Experience questionnaire (score range, 0-120) and qualitative feedback. The accuracy of algorithms was determined by repeated testing of inputs and outputs over 4 weeks. RESULTS: Design and wireframes were iteratively refined through consultation with parents and adolescents confirming the final design. Beta testing evaluation was then completed by 25 participants including two adolescents. Across all participants, 84% of tasks were easy to navigate, and the Oncology Hub demonstrated high usability, usefulness, and acceptability with participants' scores ranging between 90 and 120 (mean = 112.2, standard deviation = 9.43). Qualitative feedback was positive. Testing of algorithms identified inconsistencies in understanding between clinical research and coding teams; refinements were made until the expected response notifications were returned with 100% accuracy. CONCLUSION: Technology offers new ways to think about how clinicians and families communicate and share information to harness the best of community and hospital services. Understanding how information is exchanged using health apps, and how this affects clinical workflow is critical to successful implementation, and optimizing symptom assessment and management in children with cancer. Want to improve communication about cancer symptom in children? This article describes new ways to use smartphone apps. [ABSTRACT FROM AUTHOR]

Objective: Primary objective was to determine the feasibility of three times weekly symptom reporting by pediatric cancer patients for eight weeks. Methods: We included English-speaking patients 8–18 years of age with cancer. Patients were sent reminders by text or email to complete Symptom Screening in Pediatrics Tool (SSPedi) three times weekly for eight weeks. When patients reported at least one severely bothersome symptom, the symptom report was emailed to the primary healthcare team. Patient-reported outcomes were obtained at baseline, week 4 ± 1 and week 8 ± 1. Symptom documentation, intervention provision for symptoms and unplanned healthcare encounters were determined by chart review at weeks 4 and 8. The primary endpoint was feasibility, defined as at least 75% patients achieving adherence with at least 60% of SSPedi evaluations. We planned to enroll successive cohorts until this threshold was met. Results: Two cohorts consisting of 30 patients (cohort 1 (n = 20) and cohort 2 (n = 10)) were required to meet the feasibility threshold. In cohort 1, 11/20 (55%) met the SSPedi completion threshold. Interventions applied after cohort 1 included engaging parents to facilitate pediatric patient self-report, offering mechanisms to remember username and password and highlighting potential benefits of symptom feedback to clinicians. In cohort 2, 9/10 (90%) met the SSPedi completion threshold and thus feasibility was met. Patient-reported outcomes and chart review outcomes were obtained for all participants in cohort 2. Conclusions: Three times weekly symptom reporting by pediatric patients with cancer for eight weeks was feasible. Mechanisms to enhance three times weekly symptom reporting were identified and implemented. Future studies of longitudinal symptom screening can now be planned. [ABSTRACT FROM AUTHOR]

The gut microbiome (GM) has emerged in the last few years as a main character in several diseases. In pediatric oncological patients, GM has a role in promoting the disease, modulating the effectiveness of therapies, and determining the clinical outcomes. The therapeutic course for most pediatric cancer influences the GM due to dietary modifications and several administrated drugs, including chemotherapies, antibiotics and immunosuppressants. Interestingly, increasing evidence is uncovering a role of the GM on drug pharmacokinetics and pharmacodynamics, defining a bidirectional relationship. Indeed, the pediatric setting presents some contrasts with respect to the adult, since the GM undergoes a constant multifactorial evolution during childhood following external stimuli (such as diet modification during weaning). In this review, we aim to summarize the available evidence of pharmacomicrobiomics in pediatric oncology. [ABSTRACT FROM AUTHOR]

Purpose: Chemotherapy-induced nausea and vomiting (CINV) are common side effects in pediatric oncology treatment. Besides 5-HT3-antagonists, both dexamethasone and aprepitant are cornerstone drugs in controlling these side effects. Based on results of adult studies, the dexamethasone dose is reduced by 50% when combined with aprepitant, because of a drug-drug interaction, even though data on the interaction in children is lacking. The current study was developed to investigate the effect of aprepitant on dexamethasone clearance (CL) in children, in order to assess if dexamethasone dose reduction for concomitant use of aprepitant is appropriate in the current antiemetic regimen. Methods: In total, 65 children (0.6–17.9 years), receiving intravenous or oral antiemetic therapy (dexamethasone ± aprepitant) as standard of care, were included. 305 dexamethasone plasma concentrations were determined using LC–MS/MS. An integrated dexamethasone and aprepitant pharmacokinetic model was developed using non-linear mixed effects modelling in order to investigate the effect of aprepitant administration on dexamethasone CL. Results: In this population, dexamethasone CL in patients with concomitant administration of aprepitant was reduced by approximately 30% of the uninhibited CL (23.3 L/h (95% confidence interval 20.4–26.0)). This result is not consistent with the results of adult studies (50% reduction). This difference was not age dependent, but might be related to the route of administration of dexamethasone. Future studies are needed to assess the difference in oral/intravenous dexamethasone. Conclusion: When dexamethasone is given intravenously as a component of triple therapy to prevent CINV in children, we advise to reduce the dexamethasone dose by 30% instead of 50%. [ABSTRACT FROM AUTHOR]

Background: Shortages and unequal access to anticancer medicines for children and adolescents are a reality in Europe. The aim of the European Society for Paediatric Oncology (SIOPE) Essential Anticancer Medicines Project was to provide a list of anticancer medicines that are considered essential in the treatment of paediatric cancers to help ensure their continuous access to all children and adolescents with cancer across Europe.Methods: This pan-European project, done between Jan 20, 2020, and Feb 18, 2022, was designed to be a systematic collection and review of treatment protocols and strategies that are used to treat childhood cancer in Europe. We formed 16 working groups on the basis of paediatric cancer types, and which were based on the existing SIOPE Clinical Trial Groups. Workings groups consisted of representatives from the SIOPE Clinical Trial Groups, Young SIOPE members, and senior paediatric oncology experts. Each group collected existing treatment protocols that are used to treat the respective cancer types in Europe. Medicines from the standard group of each protocol were extracted. For medicines not on the WHO Essential Medicines List for children (EMLc) 2017, working groups did a literature search to determine whether the medicines should be defined as essential, promising, or neither essential nor promising. Each group provided an individual summary, and all medicines that were considered essential by at least one group were combined in a joint list.Findings: The working groups identified 73 treatment protocols used in Europe and defined 66 medicines as essential. For several newer medicines, such as kinase inhibitors or tisagenlecleucel, the supporting evidence was insufficient to consider them essential, so these medicines were defined as promising. 25 medicines were considered promising by at least one working group. 22 (33%) of the 66 essential and none of the promising medicines were included in the WHO EMLc 2017. The WHO EMLc 2021 included two new medicines (everolimus and vinorelbine) following applications we made as a result of this project.Interpretation: Medicines that were defined as essential within this project should be available for the treatment of childhood and adolescent cancer continuously and across Europe. This list can be used to support and guide stakeholders and policy makers in negotiations on a national and European level regarding shortages, accessibility, and affordability of these medicines.Funding: None. [ABSTRACT FROM AUTHOR]

Knowledge of the complexity of the gut microbiota is expanding, and its importance in physiological processes and disease development is widely studied. The aim of this review is to present the most relevant and recent research on the associations between gut microbiota and oncologic disease. Recently, a number of associations between the gut microbiome and neoplasms—regarding tumorigenesis, prognosis and therapeutic efficacy—have been reported. The effects of the gut microbiome on these processes are via the direct and indirect immunomodulating effects of bacteria. Studies have been done mainly in adult populations, where its effect on immunomodulating therapies was unambiguous. In paediatric populations, however, due to the low number of cases and the complex therapeutic approaches, there have been only a few studies. Among them, children with acute lymphoblastic leukaemia were mainly involved. Significant alterations in the abundance of certain bacteria were associated with altered therapeutic responses. Regarding solid tumours, studies with low case numbers have been reported; no significant discoveries have been described so far. In the future, studies with larger cohorts are needed in order to better understand the associations between bacteria and neoplasms and to improve prognosis in the paediatric oncologic population. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer often involves a long-term engagement of children and their parents with health services. During this journey, communications between professionals, parents and young people can be stressful for all the stakeholders. This study explores the communication preferences in paediatric oncology. Objectives: The objective of the present exploratory qualitative study was to understand the views of professionals regarding information exchange during cancer treatment of children and complement these findings with clinic-based ethnographic observation of real-life consultations. Methods: Using qualitative methods, in-depth interviews were conducted with paediatric oncology professionals. The interviews had been audio-recorded and transcribed verbatim. Alongside in-depth interviews, real-life interactions between parents, professionals and children were observed. Data were analysed using a thematic analysis framework as suggested by Braun and Clark. Results: Paediatric oncology professionals (n = 14) were interviewed from diverse professional backgrounds that included consultant paediatric oncologists, junior specialist trainees in paediatric oncology, paediatric oncology nurses, social workers, survivor counsellor and psychologists looking after children with cancer. Additionally, clinic-based ethnographic observations (n = 10) of interactions between professionals, parents and young people were also conducted. The following themes emerged from the interviews: a) Information needs of children were very different from adolescents. Children were more worried about ‘here and now’; b) adolescents were, on the other hand, mostly worried about the ‘impact of cancer on their broader life, friendships and academics’; c) parents were curious about the outcome, costs and effectiveness of treatment, and different patterns emerged for mothers and fathers; d) information needs were dynamic and different at the start of the treatment, during treatment, at remission or end of life; e) the journey of the clinicians themselves impacted information-sharing practices; and f) direct observation of consultations highlighted the importance of priming parents before delivery of information, having multiple family members during the conversation and managing intense emotions expressed during the session. Conclusion: Paediatric oncology professionals need to be sensitive about the dynamic nature of information needs while interacting with children and parents of children with cancer. The above findings may help tailor the discussions that professionals ought to have with families with a child with cancer. The results may contribute to the understanding as well as to developing training courses on communications in paediatric oncology for low- and middle-income countries. [ABSTRACT FROM AUTHOR]

Child life specialists are clinically trained and educated healthcare professionals who work in both healthcare environments and the community to address the needs of ill children and their families. However, child life specialists have previously reported potential for their role, responsibilities, and scope of practice to be misunderstood by their clinical colleagues. Using a narrative methodology, this paper presents the composite narrative of Diane, whose story encompasses the stories of the four child life specialists working in adult oncology environments in Ontario, Canada. Diane’s narrative is a counter-story, which counters common assumptions, beliefs, and attitudes about child life specialists. Through spending significant time narrating the multitude of tasks that are encompassed within her scope of care, Diane reaffirms her identity as a valuable member of an interprofessional adult oncology team and counters infantilizing assumptions that she is merely a babysitter or child entertainer. Her story highlights how, while the introduction of child life specialists to adult healthcare environments is new, the work they do is of great benefit to families and their children. The lack of understanding from clinical colleagues of the role of child life specialists, however, hinders not only the development of relationships between colleagues, but also the care for these families. [ABSTRACT FROM AUTHOR]

Introduction: Insomnia and other sleep disturbances are the common occurrences in paediatric patients suffering from cancer. These may be attributed to the disease itself or its treatment and accompanying psychosocial stress. Sleep disorders including insomnia are known to have a detrimental effect on the quality of life in these patients. Aim: To estimate the prevalence of insomnia among cancer patients aged 1-15 years admitted in the paediatric oncology ward. Materials and Methods: A prospective observational, hospital-based study was conducted in the Paediatric Oncology ward, Shri Maharaja Gulab Singh (SMGS) Hospital, Government. Medical College (tertiary care institute), Jammu, India, from June 2022 to August 2022. A total of 50 patients, in the age group of 1-15 years, diagnosed with malignancies like leukaemia, lymphoma, aplastic anaemia, hepatoblastoma, etc., were enrolled after taking informed consent from their parents. Insomnia Severity Index (ISI) was administered to parents of children below 10 years age and to patients themselves who were between 10-15 years to screen for symptoms of insomnia with the help of their parents/investigators as and when required. Continuous variables were expressed as mean±Standard Deviation (SD) and categorical variables were summarised as frequencies and percentages. Results: The study subjects were distributed according to their age into three groups, as 1-5 years (n=26), 6-10 years (n=16), and 11-15 years (n=8). There were 24 (48%) males and 26 (52%) females. In this study, 32 (64%) study subjects did not have insomnia, 5 (10%) had subthreshold insomnia, 13 (26%) had moderate insomnia and none had severe insomnia. Conclusion: The prevalence of insomnia found in the study was 26%. Insomnia is common in paediatric cancer patients necessitating its recognition and management for improved quality of life. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to examine whether maternal parenting behaviors (i.e., warmth, behavioral/psychological control) moderate the association between central nervous system (CNS)-directed treatment and adjustment among pediatric cancer survivors at 3 years post-diagnosis or relapse.Methods: Three years after their child's cancer diagnosis or relapse, mothers (N = 84) reported on their child's academic and social competence, as well as their internalizing and externalizing problems. Children (N = 84; Mage = 13.21 years, 52.4% male) reported on maternal parenting behaviors. Using medical chart data, children were separated into CNS (i.e., received cranial radiation, intrathecal chemotherapy, and/or neurosurgery; N = 45) or non-CNS-directed treatment (N = 39) groups. Twelve moderation models were tested when examining two-way interactions between CNS treatment group and maternal parenting behaviors.Results: Children in the CNS-directed treatment group demonstrated significantly worse academic and social competence. Moderation analyses revealed four significant two-way interactions between CNS treatment group and maternal parenting behaviors when predicting children's adjustment. High levels of maternal behavioral control buffered the negative impact of CNS-directed treatment on children's social competence. In addition, maternal warmth had a contrasting effect, as CNS-directed treatment was associated with worse academic competence at high levels of warmth. Analyses with psychological control revealed that low levels of this parenting style were not protective against internalizing or externalizing problems among those with CNS-directed treatment.Conclusions: Children who receive CNS-directed treatment may benefit from a different pattern of parenting during early cancer survivorship. Findings highlight the importance of considering the broader family context when conceptualizing the impact of illness-related factors on adjustment among pediatric cancer survivors. [ABSTRACT FROM AUTHOR]